Raising Awareness
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NFL player Alex Johnson, along with his wife, Tasha, are sharing their personal experiences to raise awareness about raising their daughter, Lila, who is living with sickle cell disease. The running back for the New York Jets recently spoke with Healthline, detailing his journey and the challenges of parenting a child with this condition.
Both Alex and Tasha carry the sickle cell trait, which means they have a 25% chance of passing the disease to their offspring. While Alex first noticed symptoms during his collegiate football career at the University of Michigan, Tasha was largely asymptomatic. “I always knew about the trait from my mom, but I never considered the potential severity it could have on our family,” Tasha explained.
Their twin daughters, Lila and Mia, were born in 2018, and Lila was diagnosed with sickle cell disease shortly after birth, while Mia only carries the gene. “It’s tough for Lila to grasp what sickle cell means at her age, so we have to check in with her daily about how she feels and if she’s in pain. After any medical visits, we make it a point to celebrate with cake and a small gift, so she has something to look forward to,” said Alex.
Alex emphasized that sickle cell will not define Lila. “It has some limitations, but as long as we stay proactive, she can enjoy life to the fullest. I want her to feel empowered and not see herself as a burden. It’s important for her to embrace this part of her identity,” Tasha added.
Initially, Alex hesitated to speak publicly about Lila’s diagnosis, wanting to shield her from scrutiny. However, he soon realized that sharing their story could help other families facing similar challenges. Consequently, the couple has teamed up with organizations like Global Blood Therapeutics and Sickle Cell Speaks to advocate for better awareness and support for this rare disease.
“A lot of families only seek help during a crisis, which is often too late. It’s important to talk about it and seek help whenever needed. I want other families to know they are not alone, and I feel it’s my duty to be a voice for my daughter and others in the same situation,” Alex stated.
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In summary, NFL player Alex Johnson and his wife, Tasha, are raising awareness about sickle cell disease, which affects their daughter Lila. They are committed to ensuring she leads a fulfilling life despite the challenges of the condition, while also advocating for greater awareness and support for families facing similar situations.